Tuesday, 30 April 2013

Well, its been 8 months since my last post, and our world really has changed!

as you know, last time I posted, our Little man Dylan had just arrived...

I didn't talk about this at the time, because to be honest, we weren't dealing with it very well...

but our gorgeous little fella has given us a bit of a rough time...

Without writing the equivalent of war and peace...

I'll explain

We've been having hospital appointments at one place or another more or less fortnightly since he was born.

He was born with left sided deafness, and his left ear is smaller than the right,

he also has an issue with the facial nerve on the same side.

add to that, tight muscles in his neck, which prevented him turning to the left for a few weeks...

which in turn has caused his head to become flattened on the right side....

we've seen several specialists and had LOADS of appointments, and he has been diagnosed with whats called a hemifacial microsomia... (which literally means half the face is smaller)

we have been told by the craniofacial specialist at birmingham childrens hospital that its a mild case, and that usually no intervention is needed... so at the moment we are now set for yearly reviews there...

ENT have done an MRI scan of his inner ear (this was unbelievably scary) at the moment, the news we have is that there doesn't appear to be any abnormality, so we still dont have an answer to why he's deaf...

we should be hearing from them this week...

on the plus side... after several hearing tests, and behaviour tests, we've just had confirmation that due to his right side being good... he has hearing in the normal range... phew!

we see a teacher for the deaf, who is lovely...and helps us with communication etc...

we don't see audiology or ear nose and throat for another 6 months now.... (yey!)

still....he's a little star...apart from what appears to be a mild delay in his motor skills....(due to his shoulders being tight as a result of the neck issue)

he is doing great!

we are in physio for his neck, and he's getting there... appointments have slowed down there too!

things have been tough, I'll be honest, but somehow you just get on with it...

its been difficult to just get on with life, cos there's always the next appointment looming...

But the FAB news is that next month we have NO appointments!!! we've never gone more than 2 weeks before, so this is a really big deal for us... and so far we only have a physio appt booked for June!

So thats our 8 months...

I have meant to post so many times, but I've never been good at talking about personal stuff... and people don't always want to read it!

still.... you got the shortened version...lol!

Heres a couple of 3 month old, and then 6 month old pics of trouble....

I don't have any newer ones uploaded... but will sort some out soon...

3months....

6 months...

and one of him at 3 months with his very proud and loving big bro.... who was 14 on Sunday!! OMG!! where have 14 years gone????

awww...my beautiful boys!!

anyway....

Hope you are all well and still crafting??

I've not really been keeping up with blogland...so I have no idea what's going on....

I do have lots of other news, but I'm not sure wether to leave it till another day...